Since then I have had a combination of over a dozen CT scans, PET scans, steroid treatments, and multiple biopsies of both my lymph nodes and lungs. To date I have been to the University of Chicago twice to see both Oncology and Pulmonology as well as over a dozen specialists within DuPage Medical Group and Rockford Health Physicians.
Last fall it was thought that my diagnosis was Common Variable Immune Deficiency (CVID). This is a primary immune deficiency that causes people to have recurrent infections, get many colds and illnesses, and produces lung problems and lymph node inflammation. In October of last year, I started a new medication (a form of human plasma) that I transfuse into myself weekly to supplement my immune system.
In April of this year I had my labs repeated and my immunoglobulin level was within normal range--- I was SO EXCITED, I COULD HAVE THE ANSWER, the diagnosis was correct. Well, my excitement ended that next week when I had a repeat CT and discovered that my nodules were still there, more present then ever in both my lungs and lymph nodes, and my chronic cough continued... Then I met with my Pulmonologist, Oncologist, and Immunologist and they all decided that "I needed more advanced care". My Oncologist said short of having a biopsy every six months to ensure that the cells haven't mutated into cancer she doesn't know what else to do. The diagnosis of CVID is in question and all my doctors agree, they have exhausted their resources, I need to figure out what this is before...
So, they referred me to the Mayo Clinic in Minnesota and I have an apt on August 3rd!!! The bad news is that my market place Humana insurance will not cover the visit, despite many appeal attempts by my Oncologist... "Without coverage” Mayo agreed to see me but they require a $5,000 deposit to be paid in full at least one hour prior to my appointment.... I considered cancelling BUT my mind goes back to Christmas Eve of 2013 when I was told I had Lymphoma, and I can't let that happen again. I NEED a doctor to figure out what is wrong for the sake of my future and the future of my 5-year-old little girl.
So, my need is to raise this money before the 1st of August so I can pay my deposit in full and go see the specialists at the #1 ranked hospital in the nation- the Mayo Clinic..
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